Pancreatic Cancer Group: Introduce yourself and connect with others

I hope you had a wonderful holuday and got to meet your grandbaby!

@Fassbinder
Took my guy to the Dr today to have staples removed and check on the fluid in the drain after Whipple two weeks ago. Its looking like a leak. They are sending it out to the lab. Otherwise, doing well. Praying for no fever...he has had pancreatitis before and a gall bladder removal that led to sepsis...thought we were over this!! Can also relate to not being there for him at the hospital...he was in 9 days. Very hard to be a caregiver for someone on Fentanyl epidural...the nurses were great!
Will be watching your progress...

Hello,
I'm Cathy and I live in Portland OR. I have been married for almost 24 years and we have a 13 year old daughter.
I was very recently diagnosed. I am scheduled to have surgery this Friday (Jan 31,2020) The cancer is in the tail. I will be having my spleen removed along with the lesion. I am getting more scared and anxious. But trying very hard to keep a positive attitude. I have been walking every day, eating pretty well overall and drinking a lot of water. They told me I'll probably be in the hospital three to five days and after surgery i'll have chemotherapy. Thank you

@marvinjsturing I think we may have communicated in the past. I just reviewed your posts. I’m wondering how you’re doing, whether there is any news. My husband had his stage IIA pancreatic cancer diagnosis after a Whipple at Mayo for IPMN pancreatic cysts the end of August last year. He then had 6 months of Folfirinox chemo. We’re going back to Mayo the end of this month after a locally done CT and PET scan evidently shows something that is worrisome at the surgical bed. His CA-19 and CEA labs are within normal range but we haven’t met with our local oncologist yet to be briefed on the PET results. We don’t know much yet, only that Mayo has already called us and scheduled him for multiple appointments, EUS, surgeon, oncologist and with a radiation oncologist. So any insight anyone can share about Radiation after Whipple and Chemo would be appreciated. I obviously don’t know much at this point. I’m wondering what Mayo recommends, regular radiation vs proton, and on what basis. Hope you are managing and thanks!

Hello everyone. My husband was diagnosed In July of 2018 with cancer in the pancreas tail with metastases to the liver in addition to veins around the spleen. We came to Mayo hoping it might be operable, or failing that, eligible for a clinical trial. The trial drug, along with Abraxane and Gemzar stopped working after 9 months. Then he began a regimen with 5 FU. Now I am afraid resistance is again setting in. Even though the last scan did not show progression, his CA 19-9 has begun to rise and his ascites are accumulating at an ever faster rate. He has to have them drained every 10-14 days. The last progress notes mentioned speaking to us about a biopsy on his next visit. I am hoping for better news, but fearing the worst. Stories of hope are most welcome!

@marvinjsturing thanks for the update. I am very interested in how you continue to do. I hope you are able to make the most of these days despite the pandemic and that you are feeling tolerably well. Your numbers are interesting. We got the results of my husband’s PET scan today. There is an area at the surgical site that is apparently either a recurrence or simply inflammation. He was staged as IIA at surgery and has had this area which includes some fat necrosis ever since Whipple. But now the area is a little bit larger in area and the pancreatic duct is some dilated. His CA-19-9 is 9, two months ago it was 10 but it has never been outside normal range. CEA is normal also. So we’re in a waiting game before Mayo appts, as you are. I was interested in the radiation/chemo percentages. Thanks so much.

My husbands experience with the CA 19-9 has been similar to yours. It goes up and them comes back down. If his stent that he has in his bile duct gets sludge in blocked that will elevate the number. If his bilirubin goes up that usually means the CA 19-9 goes up as well. When they replace the stent it usually goes up a bit just from the Doctor going in to replace the stent.

@susan2018 At this the plan is to check .CA 19-9 monthly. In February at Mayo it was 164. In Sioux Falls in June it was 86. At Mayo in July it was 126. The jump from 86 to 126 sounds like too much just to be a difference in labs. It will be interesting to see what it is in Sioux Falls next month. My understanding is that typical treatment for recurrence is radiation and chemo. I was told that radiation alone has a 30% success rate and radiation and chemo together have a 40% success rate. With my kidney problems, if I did chemo I would also have to do dialysis. To me, the added benefit of chemo was not worth the extra requirement of dialysis. I will be going back to Mayo for another PET/MRI scan in October. We will have a better idea of future treatment after that. Last February, I had an EUS/biopsy done and I consumed with a surgeon who told me that surgery was not an option for me.